One of our members is experiencing some pretty severe ACA/ scleroderma problems. This is a very serious case...the worst I have heard of.
I am needing any and all info that we can find re: treatment for either, and links that connect the two.
If any of you are experiencing either one of these conditions or both...
PLEASE share what you have learned, who you are seeing and what you are doing to treat these conditions.
I thank you so much in advance for any help you may be able to offer. Melanie
Posted by treepatrol (Member # 4117) on :
What is an ACA?
ACA (acrodermatitis chronica atrophicans) is a skin rash normally seen in patients with late stage Lyme disease which is usually attributed to Borrelia afzelii. It is sometimes mistaken for scleroderma. The ACA rash indicates ongoing chronic infection.
Thank you so very much Tree-hugger! The links were wonderful, lots of great reaading there!
You ARE a love, and I SO appreciate you!
Miss Cave, Yes, ACA is typically associated with the european strains, but we ARE finding that it is also occuring here. The docs are baffeled...the patients dont know what to do, etc.
We need a broader perspective on what the term "typical" means!
As I understand it, ACA is treated with penicillin, but scleroderma is is treated with mega steroids ans is usually a death sentence.
This MUST be changed...as the two diseases are seemingly IDENTICAL.
Any other feedback would be so appreciated!
M
Posted by trueblue (Member # 7348) on :
Melanie, You might want to contact Paul from Baltimore, from the Lyme Chat. He has the afzelii strain and often mentions ACA. It sounds like he may know something about this.
I have his email addy. I'll PM it to you in case you don't.
Somebody else has mentioned having that European strain but who it is escapes me ATM. Posted by Melanie Reber (Member # 3707) on :
Thank you so much Bluebird, I had completely forgotten that about Paul-Bob
I will contact him shortly!
M
Posted by Melanie Reber (Member # 3707) on :
UP for more help.
PLEASE...this is happening to someone that we all know and love...
and we need answers, suggestions, leads, anything!
Posted by Health (Member # 6034) on :
This is a very important thread so dont want to throw it off,
but would like to know how one knows if they have the European Strain of lyme? Is treatment different then the USA or Candadian?
I was sick overseas and LLMD said I may have gotten it over there. What do the rashes look like, I have rashes all over my chest, my cheeks lately, getting much worse.
thanks,
Trish
Posted by focusonsurvival (Member # 9124) on :
I have the European strain as well as others and have the ACA. I do not have it in the typical location (arms,legs, however). I would be happy to speak with the person having the trouble. PM me.
Posted by trueblue (Member # 7348) on :
up
Posted by Jessica's Mom (Member # 9877) on :
Hello,
My name is Cheryl and I read a message on the Road Back Foundation Bulletin Board that asked that people experienced (I am experienced but new) with Scleroderma come over and read this message and respond.
I am not completely familiar with this board and the subject there of, but I am familiar with Scleroderma and the Antibiotic Treatment for it. I know that antibiotic treatment is also used in some fashion for Lyme disease, my daughter's (she is the one with Scleroderma)doctor is also an experienced Lyme Doctor, who also practices the Antibiotic protocol for Rheumatic illness.
There is a book titled, Scleroderma, The Proven Therapy That Can Save Your Life, by Henry Scammell that I feel is a must read for any patient with Scleroderma. Additionally, there is a wealth of information this treatment on the website www.roadback.org. The bulletin board there has many experienced patients that have recovered from Scleroderma, if you want good information on what can be done for your loved one, I recommend that you go to that BBoard and make a post with any questions you have.
Good luck!
Cheryl Ferguson
Posted by Carol in PA (Member # 5338) on :
Health/Trish:
You wondered what the rashes look like.
If you go to Google.com, you can look for images.
Copy and paste in the names of any of the diseases in treepatrol's post, or the names of the rashes on the links he provided.
I just did that. Yowza.
Carol
Posted by Lymetoo (Member # 743) on :
Thanks very much, Cheryl!!!
Posted by Melanie Reber (Member # 3707) on :
Thank you each so very much!
I am too exhausted to reply properly right now, but will get back to you this weekend.
In the meantime, please keep the suggestions, ideas, leads, research, links, anything...coming.
Thank you and Much love, M
Posted by robi (Member # 5547) on :
This is critical. We nee NEW info. ANy researchers out thee willing to help on this one?
robi
Posted by luvdogs (Member # 9507) on :
Questions:
- Is there any implication that scleroderma can be caused by Lyme or other Tick related diseases? (at the risk of sounding ignorant)
- People are referring to their particular strains of bb. My doctors have never differentiated for me, but I have a history of extensive travelling and first became severely ill with Lyme in Costa Rica. I later heard from a friend in Costa Rica that there was a strain of Lyme-like illness found in Costa Rica. Is this something that we could test for?
Thanks and I hope the best for those with scleroderma bc I know it can be very debilitating. I wish I had some answers, but I know very little about it.
[ 18. August 2006, 05:21 PM: Message edited by: luvdogs ]
Posted by Lymetoo (Member # 743) on :
I'm going to be out most of the day, but would someone here keep bumping this to the top for Melanie? She asked me to keep it up.
Thanks!!
Posted by radiogirl (Member # 9202) on :
I think people would be surprized by the autoimmune diseases that are responding nicely to the antibiotic protocol described in Henry Scammells book. It is well worth leading those with these types of illnesses to this therapy .Its an option that others often dont know about and who have had the door to wellness closed to them .Many have achieved a quality of life that had once seemed impossible.Best Wishes for a Wonderful Weekend All,RG
Posted by Lymetoo (Member # 743) on :
PS.. If anyone has time to do some research on this, Melanie would greatly appreciate it. She's been very ill herself and hasn't been able to do much. Thanks again!
Posted by 5dana8 (Member # 7935) on :
I'm not much of a researcher and keep finding things already found. Sorry if I'm not even close.
Hey, I boosted the thread anyway. Posted by sizzled (Member # 1357) on :
up!
Posted by robi (Member # 5547) on :
up one more time
Posted by Lymetoo (Member # 743) on :
Hey, you guys are quite the UPPERS!!
Posted by sizzled (Member # 1357) on :
Does this respond to ANY abx?
Is so, which ones??
Posted by sizzled (Member # 1357) on :
Up for the weekend crowd!
Posted by Melanie Reber (Member # 3707) on :
My dear friends,
I just don't know how to thank you enough for all of your help here, in messages, emails, etc.
Once again, you are so amazing the way you rally to the aid of others!
I am so touched by your personal stories of how you and loved ones have dealt with this and so appreciative of your willingness to share and the offer of help.
Thank you for keeping this at the top for more answers...yes, this IS critical, and we are needing every bit of information that we can get our hands on.
I have been copying all of your links, and messages to weed through this weekend searching for answers. Every little piece of info is so very helpful, so please just put it all out there whether you think it will help or not. One never knows where the key will be found. But, I am convinced there IS a key hiding somewhere.
Because I agreed to post this anonymously for my friend I cannot divulge too much information right now. But I think it important for you to know that this person already knows everything there is to know about TBDs and ACA...so NEW information is essential.
However, some of the older stuff that might not have meant much before now is also helpful to read back through. So, please do not hold back thinking that we may already have what we need, OK?
If I am sounding desperate...that is because I am. I am devastated at the thought of losing one of my very best friends to this...so PLEASE...do what you can to try and help us find answers.
I know that many of you are so sick, and so over committed already, so I am even more grateful to you for making the time to help.
OK, time to dry my eyes and answer some of your questions to the best of my ability:
Health, I am not an expert by any means on this topic. I can only assume that with the different strain of Borrelia afzelii and other European strains, that the treatment may be different? Have you tried the Eurolyme site? Website: http://groups.yahoo.com/group/EuroLyme/ Come to think of it, that may be a good place for me to look as well, thank you and best to you.
Focus, Thank you so very much for your most generous offer. I will PM you for the number and keep it safe for our friend.
Cheryl, Wow, I am SO appreciative that you would take the time help here - bless you! Thank you for the book information and the website information. I will try to get over there as soon as I can.
Carol, Our Google angel. Thank you for all that you do for so many.
Tootsie, Robi, Blue, I can't thank you enough for helping to keep this up. It means the world to me.
Luv, -yes, there are articles and abstracts that link scleroderma to TBDs. The problem is that not many patients or doctors know about them.
-as I understand it, testing is just as difficult for these other strains as it is for Bb...but I am not an expert, so do not know for sure. I have read that biopsy is the best means IF you have the rash. The problem is, sometimes a biopsy is also difficult for obvious reasons. When I was last in Costa, we also found ticks very quickly...so yes, that is a very strong possibility for you. You have helped us more than you realize...and I thank you for that.
Radio, Thank you for the added vote for the Scammells book. I will try and order one today.
Dana, you are such a love, thank you for researching! I haven't had time to read through your links but hope to get to them soon.
Mizz Sizz, I am a dunce with meds, unless I have taken them myself, so I can't answer your question right now. This person has had every co-infection imaginable. And most likely has been tested and treated at some point for everything.
From what I have learned so far, ACA responds to penicillin, and I am finding out that scleroderma may respond to minocycline...but I need to do more homework to know more than that. I SO appreciate your help with this and for all that you do for so many.
Blue, saving that link for reading today- thank you so much!
Once again to all...thank you SO MUCH, and please keep the answers coming. Much love, Melanie
Posted by Melanie Reber (Member # 3707) on :
Hi Melanie, Has your friend spoken with anyone at www.roadback.org .There are a number of scleroderma patients over there that have put their disease in remission with minocycline.Some of them who were close to death doing well now.
There is a post there now by some one named Michele I believe who had a serious case and has been well for 4 years but insurance wont refill her brand only minocycline that scleroderma patients have to have.The generic is not as effective.
I believe you are onto something in that I truely believe alot of these diseases may have a microbial base.Mino from what I hear also inhibits collagen production as well .I wish you and your friend well as scleroderma is particularly cruel.God Bless,RG
Posted by Melanie Reber (Member # 3707) on :
Alright, I am beginning to gather up my thoughts and those of others who have shared with me into some sort of coherent mess: and I would like to continue this dialog with those who are willing.
Cave brought up a very good point...''how do those European ticks get here?''
Let's think about that...
What is the most common form of the spread of this disease? Migratory birds. They carry the ticks from one place to the next, and we all know that they know no borders.
My sister from New Orleans just sent a message yesterday that the wild parrots had returned! Great! But where were they? Where did Katrina send them to live until they found their way home, and what did they bring back with them?
Second most common form of spread? Mice. This is how many of our continental diseases spread in the past...mice or rats that stowed away on ships.
Third? Deer. As we continue to expand into THEIR territory we are doing damage that cannot be undone. We are isolating their feeding areas and containing the very cause within our living spaces.
Fourth? Human. We know that Bb is a cousin to syphilis...the most common spread of that is human sexual contact. This is a much debated form, but until proven otherwise, I will continue to consider all Borrelia as a STD.
We now have proof that certain co-infections can be transmitted both vertically and horizontally. What is that saying...lack of proof is not proof of something? (someone help me out here)
Tell me, why are many who have traveled overseas coming down with ACA? The ``European'' strain? And then tell me WHY are many who have NOT traveled overseas also coming down with ACA? Or Scleroderma?
We know that there are something like 300+ strains of Borrelia, but we only have the capacity to test for a very few. Why are we not testing for the European strains here? Why are we not testing for every strain here?
Perhaps, the same reason that we don't automatically test for co-infections? Ignorance. OR, because the testing is inaccurate at best.
We know that these auto-immune diseases don't just fall from the sky and land on us...or do they? (remember the birds?) SOMETHING is causing them...something bacterial, or microbial, or otherwise.
If NOT, then WHY are some people ``recovering'' from them with antibiotic therapy?
Posted by Carol in PA (Member # 5338) on :
Melanie, You said, "We now have proof that certain co-infections can be transmitted both vertically and horizontally. What is that saying...lack of proof is not proof of something? (someone help me out here)"
Absence of evidence is not evidence of absence.
Regarding the European strains, I wonder if some of our forbears brought them over to America with them when they immigrated.
Then mothers could have passed them to children, etc.
Just a thought. Carol
Posted by Melanie Reber (Member # 3707) on :
Thank you Carol... I knew it meant something like that. But the brain takes holidays every now and again. Wish it would take me along too.
Interesting thought on the pass down theory... our friend has Babs...and her mother suffered with Malaria off and on most of her life.
Did the Mom travel anywhere exotic to get maleria...not that I am aware of.
We do have proof of Babs being transmitted vertically. It was a study done in Japan.
I confess, I have not followed any links here, so forgive me if this is repeat info.... I've got to get off this computer for today............
Back when I thought I had Fibromyalgia and stiffening of all my body tissues, my doc agreed to put me on a ``drug'' (you can get it over the counter, too) called Potaba .
Potaba is an old treatment for scleroderma and related disorders. Since it is a formulation that is available over the counter as a ``supplement'', it appears that the drug companies lost interest in promoting it. Your insurance may NOT cover Potaba for that reason. My insurance did for awhile, and then quit. So I quit taking it. But I think it was helping so I wish I would have continued with it.
Google ``Potaba scleroderma'' and you will get many hits.
Melanie, this is something your friend could try on her own for 3 months or so to see if it was helpful. Or perhaps she could get a prescription from her doc.
Here is the first link that popped up which does explain a few things about Potaba.
I hope something is helpful, will look some more later. I haven't read through these, just skimmed.
[ 20. August 2006, 03:44 PM: Message edited by: trueblue ]
Posted by Lonestartick (Member # 2151) on :
The first citation below looks very promising, but I don't have access to it right now. Perhaps someone who lives near a medical library could pull it for you.
1: Pediatr Allergy Immunol. 2004 Dec;15(6):570-2. Links Linear scleroderma 'en coup de sabre' associated with facial atrophy in a patient seropositive for Borrelia burgdorferi: a true case of molecular mimicry?Salpietro DC, Merlino MV, Bruglia S, Guarneri F, Vaccaro M. PMID: 15610374 [PubMed - indexed for MEDLINE]
1: Hautarzt. 1994 Mar;45(3):171-5. Links [Sclerodermiform skin changes in Borrelia burgdorferi infection. Diagnostic use of polymerase chain reaction][Article in German] Weidenthaler B, Roux M, Moter SE, Schulze HJ, Kramer MD. Institut fur Immunologie und Serologie, Universitat Heidelberg.
We report on a 61-year-old patient with sclerodermiform skin lesions of the extremities and polyneuropathy. Borrelia (B.) burgdorferi DNA was detected in lesional skin by the polymerase chain reaction. Serological testing revealed IgG antibodies to B. burgdorferi. Histology revealed an inflammatory stage of a sclerotic reaction in the lesional skin. The admixture of plasma cells and the perineural distribution of the cellular infiltrate was suggestive for a borrelia infection. Immunohistochemical staining for the B. burgdorferi flagellin (41 kDa) revealed a positive staining reaction in the epidermis of lesional skin. The improvement of both the dermatological and the neurological symptoms upon antibiotic treatment with ceftriaxone was taken as further support for the diagnosis of a. B. burgdorferi infection.
1: Przegl Lek. 2005;62(5):310-3. Links [Pathogenesis of skin scleroderma--literature review][Article in Polish] Wojas-Pelc A, Lipko-Godlewska S. Katedra i Klinika Dermatologii, Collegium Medicum, Uniwersytetu Jagiellonskiego w Krakowie.
The pathogenesis of skin scleroderma (LS) is still unknown. Disturbances of vessels system, connective tissue metabolism and humoral and cellular immunological response is observed. Antinuclear antibodies are detected in 30-80% of patients with different types of skin scleroderma. They are present more often in patients with disseminated lesions and linear type of LS compared to morphoea au plaque. In our own analysis 28.5% of patients had also antibodies directed against Borrelia burgdorferi. It is believed that the injury of endothelial cells and proliferation in medial part of small vessels - which both lead to chronic ischemia - are the earliest disturbances observed in histopathological examination of the skin taken from systemic as well as from skin scleroderma patients. During last few years, there were some interesting reports concerning functional changes of endothelial cells which led to disturbances in tension of vessels smooth muscles. Free radicals - in genetically predispose people--can also provoke scleroderma lesions through their injury action on endothelial cells and stimulation of fibroblasts. In morphoea, the process of fibrosis begins around vessels. Deposition of connective tissue matrix is observed, especially collagen type I and III. This stimulation of fibroblasts as well as accumulation of connective tissue matrix are secondary to some stimulatory factors. These are: PDF, bFGF, TGFbeta and some cytokines. In morphoea patients serum levels of IL-1, IL-2, IL-4, IL-6 and IL-8 were elevated. In literature, levels and production of collagenases were decreased, although more authors say that tissue inhibitors of metalloproteinases are the main factor in fibrosis. The analysis of data tends to suspicion that enormous fibrosis observed in different types of scleroderma can be the result of increased production of collagen and other components of connective tissue as well as their incomplete degradation. Presented clinical and laboratory data show how many different factors influence etiopathogenesis of morphoea.
PMID: 16334538 [PubMed - indexed for MEDLINE]
The following abstract demonstrates similarities between localized scleroderma and acrodermatitis chronica atrophicans (ACA), but it goes on to question the relationship to borrelia spirochetes. The Polish abstracts below this one are much more promising.
1: J Cutan Pathol. 1996 Aug;23(4):350-8. Links Role of Borrelia burgdorferi in the pathogenesis of morphea/scleroderma and lichen sclerosus et atrophicus: a PCR study of thirty-five cases.De Vito JR, Merogi AJ, Vo T, Boh EE, Fung HK, Freeman SM, Cockerell C, Stewart K, Marrogi AJ. Department of Dermatology, Talane University School of Medicine, New Orleans, Louisiana 70112, USA.
Morphea (localized scleroderma), and lichen sclerosus et atrophicus (LSA) share common features with acrodermatitis chronica atrophicans (ACA), a known chronic form of borreliosis. These include similar histologic findings such as diffuse dermal fibrosis. These observations have led several investigators to consider the possibility of Borrelia burgdorferi (Bb) as a common etiologic factor among all of these diseases. The aim of this study is to investigate the role of Bb in the pathogenesis of morphea and LSA, by assaying for its presence in lesional skin biopsies from patients with these diseases. We utilized the nested polymerase chain reaction (PCR) technique to selectively amplify a longer segment of a Bb-specific somatic gene, on DNA from paraffin-embedded, formalin-fixed tissues. The results revealed no Bb-specific DNA sequence in 28 specimens of morphea/scleroderma and 7 of LSA with varying stages of disease. Furthermore, confirmatory Southern blot of the PCR product, resulted in similar findings. These data seriously question the role played by this spirochete in the pathogenesis of morphea and LSA, at least in the southeastern part of the USA.
1: Przegl Lek. 2002;59(11):898-902. Links [Presence of the antinuclear antibodies and antibodies to Borrelia burgdorferi among patients with morphea en plaque, deep linear scleroderma and atrophoderma Pasini-Pierini][Article in Polish] Wojas-Pelc A, Wielowieyska-Szybinska D, Kieltyka A. Klinika Dermatologii i Wenerologii Collegium Medicum Uniwersytetu Jagiellonskiego, Krakow.
Circumscribed scleroderma belongs to the groups of the diseases characterized by fibrosis of the skin and the deeper tissue. According to the published data, 47% to 76% patients with circumscribed scleroderma present antinuclear antibodies (ANA) as well as antibodies to Borrelia burgdorferi which is believed to be causative factor of the disease. The study was conducted in the group of 50 consecutive patients with circumscribed sclerosis (en plaque, deep linear, atrophoderma Pasini-Pierini). Antinuclear antibodies were detected in 18% of the patients in the titer of 1:40 to 1:320. There was statistically significant correlation between activity of the disease and extensiveness of the skin lesions as well as location on the lower extremities although there was no correlation to the clinical symptoms of the disease. In 28.5% of the patients we found antibodies to Borrelia burgdorferi with any correlation to the type of localized scleroderma or its activity. The role of the ANA with no distinctive specificity and antibodies to Borrelia burgdorferi in the localized scleroderma is still unclear.
1: Klin Monatsbl Augenheilkd. 1999 Oct;215(4):258-62. Links [Eye involvement in circumscript scleroderma--manifestation of borreliosis?][Article in German] Framme C, Dietrich J, Lohmann CP, Sachs HG. Augenklinik und Poliklinik, Klinikum, Universitat Regensburg.
BACKGROUND: The circumscript cutaneous sclerosis is an inflammato-edematous erythema of the skin, usually leading to a plaque-like sclerosis and cutaneous atrophy. The etiology of this disease remains unknown, but some authors presume a systemic infection with Borrelia burgdorferi as the underlying pathological condition. PATIENT: We present a case of a 66-year-old male patient who suffered from episcleritis of his left eye. Funduscopy showed an unilateral papillary edema. Visual acuity was 1.0. The patient had multiple erythemata of the skin of the body-trunk and the arms. On histological examination the lesions were compatible with circumscript sclerosis. Neurological examination was normal. Brain imaging (MRI), CSF examination and serology showed no pathological findings, although the patient presented with raised antibodies against Borrelia burgdorferi (IgG positive, IGM negative). Intravenous antibiotic treatment and topical steroids for three weeks resulted in a complete recovery of the scleritis, but had no effect on the papillary edema. CONCLUSION: Inflammatory pathological findings of the eye can be associated with circumscript sclerosis, a disease, that is normally limited to the skin. The pathological mechanism remains unclear. The presumption of an underlying borreliosis could not be confirmed in this case.
1: Dermatology. 2001;202(4):373-5. Links Chronic borreliosis presenting with morphea- and lichen sclerosus et atrophicus-like cutaneous lesions. a case report.Kaya G, Berset M, Prins C, Chavaz P, Saurat JH. Department of Dermatology, DHURDV, University Hospital of Geneva, Switzerland. [email protected]
We report on a case of chronic cutaneous borreliosis with manifestations clinically compatible with morphea and lichen sclerosus et atrophicus. The histopathologic features of these lesions were those of acrodermatitis chronica atrophicans. Our case illustrates the concept that clinical aspects of morphea and lichen sclerosus et atrophicus pertain to the spectrum of cutaneous borreliosis. Copyright 2001 S. Karger AG, Basel
PMID: 11455165 [PubMed - indexed for MEDLINE]
Anything for you, Lymetoo
[ 20. August 2006, 03:39 PM: Message edited by: Lonestartick ]
Posted by Lymetoo (Member # 743) on :
Could you ladies please go to www.tinyurl.com and shorten those PAGE-WIDENING URLS? Thanks SO MUCH!!
Posted by Lonestartick (Member # 2151) on :
Bacterial Infection as the Cause of Scleroderma: A Guide to Antibiotic Therapy
CantwellAR Jr, Ganger P
Abstract Scleroderma is a disease characterized by thickening and hardening of the skin. While most traditional and established treatments provide temporary improvement at best, remission is rare -- and cure impossible. Furthermore, the various medications commonly prescribed have serious side effects. There is urgent need for better treatment.
Scleroderma is erroneously considered an incurable disease of unknown cause. This communication provides evidence implicating infectious bacteria as the cause of scleroderma; and proposes antibiotic therapy as a rational and beneficial treatment for this disease.
Posted by Lonestartick (Member # 2151) on :
Your dear friend may already have this one, but it's a goody if they don't. BTW, if any of these are crowding the topic, just say the word and I can delete them. signing off for now, but I'll try and check back should any need deleting. Best wishes to both of you and to all who are helping you research this.
Excerpt on Morphea taken from Clinical Aspects of Lyme Disease suggest antibiotic treatment of morphea...
Clinical Aspects of Lyme Disease: Dermatologic, Cardiac, GI, and Gestational CME Disclosures
Harry Goldhagen, MS Julie Rawlings, MPH
``... Morphea and Lyme Disease: Are They Related? Morphea is a rare and untreatable dermatologic condition characterized by thickening and induration of the skin from excess collagen deposition. There are at least 5 forms of the disease: localized, generalized, guttate, linear, and coup de sabre (an indentation that can extend to and damage the underlying muscle and bone). The cause is generally not known, but as with any idiopathic condition, proposed etiologies abound, including radiation damage, autoimmunity, infection, vaccination, trauma, and genetic predisposition. One of the leading infectious disease candidates in the pathogenesis of morphea is B burgdorferi, although this association is a subject of controversy.[1] A number of European studies have found a correlation, while most US studies, including a frequently cited study from the Mayo Clinic,[2] have found no evidence of B burgdorferi in morphea lesions.
Andrew G. Franks, Jr, MD,[3] of New York University School of Medicine (NYU), believes there is a connection between the 2 diseases. For instance, it can be difficult to differentiate between EM and certain morphea lesions, especially if the EM lesion is not the typical bull's-eye with central clearing. The differential diagnosis for EM-like lesions is varied and can include spider bites, herpes simplex or zoster, cellulitis, fungus or tinea, granuloma annulare, drug eruption, erythema multiforme, and subacute lupus erythematosus. In many cases, it can be difficult to culture B burgdorferi from EM lesions.
Part of the disagreement between the US and other studies may be due to differences in B burgdorferi serotypes and strains that cause morphea, according to Dr. Franks. For instance, only the sensu stricto strain is found in the United States, but all 3 pathogenic strains are found in Europe. Two skin diseases -- acrodermatitis (similar in appearance to scleroderma) and lymphocytoma -- have been identified in Europe as linked to B burgdorferi; the former is associated with the B afzelii strain, and the latter with the B garinii strain.
Dr. Franks believes that serologic testing is unreliable in morphea. He said that in published US studies of B burgdorferi antibodies in morphea patients, the investigators did not check whether the subjects received antibiotics recently. Antibiotic treatment can alter the results of serologic testing. Polymerase chain reaction (PCR) testing for B burgdorferi DNA in morphea patients may also be inaccurate in the US. For instance, the PCR tests may have been too specific and missed strains or serotypes more likely to cause morphea-like skin disease. European studies have detected B burgdorferi DNA by PCR in patients with morphea. For instance, a PCR study by Fujiwara and colleagues[4] tested for afzelii and garinii strains and found evidence of B burgdorferi in non-US cases. US PCR amplification has generally only tested for the sensu stricto strain.
Dr. Franks and colleagues at NYU have recently completed an unpublished study of the association of B burgdorferi, autoimmunity, and morphea. In this study, 82 patients (average age of 27 years; range, 2-61 years) with new-onset morphea were enrolled; 14 were male. The investigators tested for antibody to autoimmune disease and to B burgdorferi by IgG and IgM Western blot (WB), with all bands reported. They used their own criteria for diagnosis of underlying Lyme disease: more than 1 IgG band on WB was taken as a positive result for Lyme. None of the subjects had clinically defined Lyme disease during the trial. For autoimmune serology, any positive test was defined as positive.
For treatment purposes, they classified the patients into 4 groups, depending on whether they were positive by WB and/or autoimmune serology. Generally, patients with positive WB received 6 weeks of doxycycline (or an alternative antibiotic), and those with negative WB were given 3 weeks of doxycycline, with an optional additional 3 weeks if improvement was seen during the first 3 weeks.
Of the 61 patients who completed the study, 34 had clinical improvement. The WB-positive, autoimmune serology-negative group was the most likely to respond to antibiotic therapy. The Lyme WB converted to negative in many treated patients.
Dr. Franks and colleagues believe that all patients with morphea are candidates for a therapeutic antibiotic trial, regardless of serologic test results. IgM and IgG WB may be helpful in the diagnosis, but current Lyme tests are unreliable in such patients. Because the risks are minimal with antibiotics, he believes it is worth trying this approach, especially since there is no effective treatment for morphea at the present time. ...''
Posted by Lymetoo (Member # 743) on :
Wow, that one was REALLY interesting, LoneStar!!!
Posted by trueblue (Member # 7348) on :
^up^ for the late crew!
Posted by Melanie Reber (Member # 3707) on :
I am overwhelmed with all of your excellent information and offers of help.
We ARE making progress finally...and I just dont know how to thank you each enough for your contributions!
It is back to work for me today, so I will have to postpone my research for the day...but please know that your work here is so very valuable and so very much appreciated.
PLEASE, if there is anything else that anyone wants to share...feel free to do so...we can never have too much information.
Especially when the subject at hand is of such extreme importance.
If I have not gotten back to you personally yet, just know that I will, as soon as I am able, and I thank you more than I am able to express at the moment.
Much love and appreciation, M
Posted by radiogirl (Member # 9202) on :
This has been a great thread! It appears there is alot of evidence that points to a microbial root cause.I say this knowing that published papers alone does not mean a conclusive answer.I keep going back to the fact that after a few years of being a part of the roadback.org community,scleroderma patients that post on the BB have regained their quality of life.
The moderator of that board has scleroderma and is living a full life and very helpful to those visiting the board as well.His opinion is there could be a number of reasons contributing to the cause of this illness.He is happy with the results of the minocycline no matter how it is taking down that disease.If your friend visits there many will be happy to share their vast knowledge gained from dealing with the disease.
I suppose what is so very frustrating and sad is that there are options to many of these illnesses that seiously ill people will never know about.Or how about when they are aware of this type of therapy doctors often talk them out of it like all mine tried to.For example my daughterhad a P.E. teacher at school who had a horrible case of CFS.My best friend goes to church with her and asked me to speak to her since she saw I was improving so much.I called her and talked in detail with her about all the info websites etc. I talked to her again later on and said her doctor said all that was a bunch of hooey and it was dangerous for her to take low dose doxy without a definite reason to take it.And so she will not even consider it now.
I spoke with my girlfriend the other day to ask how the P.E. teacher is and she told me that now one of the kids has begun to have the same symptoms and her husband has left and is filing for custody.She was told a few weeks ago not to return this school year due to all her absences from the previous years.So what is more dangerous to a human being at this point? Trying an antibiotic or slowly losing everything you have worked for and becoming suicidal.There are some things in life that are definitly not the way they should be and this is one of them.Best Wishes,RG
Posted by trueblue (Member # 7348) on :
^up^
Posted by Lymetoo (Member # 743) on :
up
Posted by trueblue (Member # 7348) on :
up some more
Posted by Melanie Reber (Member # 3707) on :
URGENT! Need help re: ACA/ Scleroderma information.
Dear friends,
We now have over 100 pages of valuable information that needs to be weeded though and organized.
Trueblue, bless her heart, has been working on this non-stop, and has compiled most things into a word document.
But the information needs editing, and the most pertinent stuff needs to be teased out to send to a Doctor who is now willing to help!
He is willing to put his research team on this right away, but first, we need to condense what we have.
PLEASE, we need someone who is willing to take this document and go through it and edit, and highlight, and UNDERSTAND what it all means enough to make that decision!
I also have other names, numbers, sites, and Doctors who will help, but again, it all needs to be organized.
Let me stress that this is for someone that you all know and love... and she has helped each one of you...if not directly, then at least indirectly with her 20+ years of Lyme and patient advocacy.
We simply can not do this alone...and I am pleading for some assistance here.
I need someone who is committed to follow this through ASAP.
Please Email me for more information.
Thank you so very much in advance, Melanie
Posted by 5dana8 (Member # 7935) on :
mel
I don't know how to use my "word" program yet. Is there any thing else I can do to help?
Posted by Melanie Reber (Member # 3707) on :
Dana, you love you!
How do you feel about going to a couple of other message board sites for more information?
Posted by bpeck (Member # 3235) on :
Mel: I've done some pretty exstensive research on ACA, including paying for pull papers out of Germany- which is where most of the knowledge on ACA is. And that's scanty.
ACA occurs in 2 stages, in long time untreated lyme. It's 1st stage is inflammaotory and can be curtailed by abx. Last stage is destruction of elastin, then skin thinning, and then vascular problems. Pretty hard (and maybe impossible) to reverse at this stage).
Histologically, it mimmicks Erythema annulare centrifugum and a few other unpronouncable maladies as ther are immune cell inflitrates.
Even in Europe it's mis diagnosed 80% of the time. In this country - good luck finding ANYONE to take you seriously. I doubt LLMDs know much about it either.
ALthough it occurs with infection from one of the European genospecies of Lyme (b.afzelii)- no one really knows if it's a late manisfestation of other species including the north americam- because quite frankly - no ones looking.
Minocycline seems to be the drug of choice for ACA.
Barb
Posted by Melanie Reber (Member # 3707) on :
Barb,
Thank you so very much for your input! Is it possible that we can talk off board, via email a bit more about this?
If you are willing, please email me at the address below.
M
Posted by trueblue (Member # 7348) on :
up
Posted by AliG (Member # 9734) on :
quote:Originally posted by cave76: I thought that ACA was the rash produced by only European ticks? Of course, we know that ticks know no borders----but can they swim?
Ticks may or may not be able to travel, but people can.... Just a thought. Posted by 5dana8 (Member # 7935) on :
please can anyone help to look thru this site for information on scleroderma
Looking for any really pertinent information such as treatments & protocals.
There are lot of posts to weed thru on other diseases such as CFIDS & lupus ect..
click on the lind below and then click on bulletin boards.
p.s. I am only up to july only so far
Posted by radiogirl (Member # 9202) on :
Hi Melanie. The moderator over at www.roadback.org has scleroderma.He has a wealth of knowledge and can tell you the parts of the literature to have on scleroderma that you need to speak with doctors and so forth.He will be able to tell you first hand how he and others have been able to achieve full remission from the disease.
Im thinking he could answer your questions in order to help whittle down all the info.His name is Richie so just post to his attention.My experience is that he has been a valuable resource to untold numbers of scleroderma patients.The ones who have been fortunate enough to find the antibiotic treatment.
I hope this helps in your fight to help a friend.RG
Posted by 5dana8 (Member # 7935) on :
I also found Richie to reply on alot of posts. I would agree with the above poster that richie would be a very good person to talk with-maybe try to e-mail him.
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